Supporting our members with serious mental illnesses

 

Sometimes in a meeting or in other social situations we may come across people who have serious (or severe  – they mean the same thing) mental illnesses. We may be worried about trying to support them or not know what to say in case we cause offence or somehow trigger an episode by talking about it.  Understanding helpful things to say can mean that we are better able to support someone with a serious mental illness.

What do we mean by a serious mental illness? Isn’t every mental illness serious?

Yes, of course to the person going through difficulties, every mental illness is serious and this is not meant to suggest that illnesses such as depression or anxiety are not serious. We all appreciate how difficult life can be when it’s hard to get out of bed, you feel a deep sadness all the time or you’re too frightened to go to work, for example. However, the term serious mental illness is usually reserved for long lasting conditions and those that can have profound negative impacts on a person’s life and this includes such conditions as schizophrenia, bipolar, dissociative disorder, for example.  Many people with serious conditions will also have depression and anxiety as part of their symptoms. We’ll call them SMIs from now on.

What might people do or say?

Some people might hear voices, see things that are not real or speak about things that could not possibly be true. Others might find that reality is rather different for them – the world might ‘feel wrong’ or they might ‘feel wrong’ in the world. Some people may talk about things that don’t make sense to most other people. Some may be very quiet as they are caught up in their own inner world. There are many ways that illness can affect people.

How can we help?

Somebody might disclose an SMI or symptoms that they feel quite embarrassed about or that they consider to be deeply personal. It’s important that we treat the person with respect and allow them to talk openly about their experiences without judgement or being overly concerned with details that they may wish to keep private.

Some things may seem absurd to you – and indeed they may do to the person concerned when they are not actively experiencing an episode of illness. It’s kind to react politely, and particularly not to laugh. Even if the person laughs themselves, of course you can see the humour in the situation, but be sure to acknowledge that you appreciate the experiences are quite serious and real to them at the time.

What should we say when people are sharing?

Leaving someone with an awkward silence at the end of their sharing could lead to the person feeling bad for having shared something that they know is unusual. They may feel embarrassed or worried that they have frightened the other members off.  We know it’s not going to be possible for us to ‘fix’ their symptoms but we can do what we at Changes do best – support our fellow members.  So perhaps you could acknowledge that their experience is distressing/frustrating/frightening/difficult or whatever is appropriate to what they have shared and ask if there is a way to help.

The member may share something and then wait to see what the reaction is –  testing the waters. It might be appropriate to ask them how their illness or symptoms affect them to see if they want to talk more about it but respect their choice to say as much or as little as they wish to.

If a member is currently holding onto a belief that is clearly not true, it’s not helpful to try and convince them of this, even if that seems logical, and it’s also unhelpful to ‘play along’ as that can reinforce the belief. It’s better to say that although you might not see things in the same way, that you understand that it’s very real for them.

Let the member know that you appreciate them sharing something quite personal and show that you’re open to them talking about their challenges.

What else could we do?

Include the member in your social plans. SMIs can be very isolating and the person may feel separate even from the rest of the group.

Ask them what helps. It sounds obvious, but everyone is different.

If they seem to be becoming unwell perhaps ask them if they have a plan for what to do. You could gently suggest that it might be a good time to check in with their caregivers.

Encourage the member to set manageable goals but try not to bombard them with suggestions.

Above all treat the member with exactly the same respect as anyone else. People with SMIs are valuable members of our groups, often offering a lot of support and advice from their wealth of experience.

If you have any suggestions yourself for how we can help our friends with SMIs to feel more included and welcome, please leave us a comment below.

To Work or not to Work

 

One of the topics that continually features in one of the Changes weekly groups (and, I suspect, all of the others also) is the topic of work–not having a job, looking for a job, getting a job, doing a job. And it’s a very ambiguous and contradictory topic, with highly conflicting feelings involved. Because, although it seems to be an aspect of life that greatly affects people’s mental health, it’s definitely not as simple as ‘work is good for you, no work is bad’, as the comments from the group revealed…

Firstly, the transition from ‘non-work’ to ‘work’ is a very difficult one and especially so if the work is full time. It’s a real shock to the system. Getting up at a certain time, spending the whole day away from your usual environment, maybe dealing with many unfamiliar people, having new responsibilities…it can be terrifying.  And so very relentless, suddenly taking up almost all of your time. It’s a transition that can also have serious practical consequences…once you’re committed to it, your benefits are gone and there’s no going back.

Secondly, there’s the Catch-22 situation people find themselves in, where, if they don’t declare their mental health issues, the necessary adjustments can’t be made, but, if they do, there’s automatic prejudice against them right from the start. This results in either too much pressure, too high expectations, from employers and co-workers, or too low expectations, where, as one group member put it, ‘everyone’s just waiting for you to fail’.

And thirdly, there’s the lack of flexibility. As someone else in the group said, ‘you have good days and bad days’; however, you’re expected to be completely consistent and to conform to a certain model, to fit into a certain ‘box’. And this is very stressful, ensuring that it becomes harder and harder to remain in that box.

None of this, though, means that work is seen as an entirely negative thing. Certainly, just as many negative feelings constantly emerge in the group around being completely out of work…lack of self-esteem, lack of social status i.e. the (very justified) feeling that those in work are largely judgmental towards the unemployed, lack of any kind of focus to your day, feelings of uselessness, purposelessness and isolation. Interestingly, lack of money, although it gets a mention, is relatively low down on the list of negative consequences, while anxiety about poverty, rather than poverty itself, is much higher.

This seems to fit with the reading I’ve done about this topic—for instance, U.S. psychology professor Barry Schwartz, in his 2015 book “Why we work”, mentions the main reasons why people seem to like work; feelings of being engaged and challenged by their work; finding it meaningful; being socially involved with others. This last point applies even if people are working in some kind of freelance or lone working capacity, as this work still brings them into some kind of purposeful contact with others. And it’s this ‘purposeful contact’ that is so important. As attendance of religious establishments decreases, as people have less time for shared hobbies and, arguably, there is less general feeling of ‘community’, work increasingly fills the social void. This explains why many unemployed people drink or take drugs habitually–it’s not just that the substance but the social group they need, a social group with a shared purpose. Schwarz also notes the importance of feeling autonomous due to your work i.e. in control of your own life. And it’s certainly true, in my experience, that you feel more in control receiving wages than benefits…when you’re dependent on benefits you’re exactly that–dependent–and it makes you feel helpless.

All of this suggests that work is not important to people primarily because of the money it brings, as you might expect, but because of the feeling of social identity. Is this a good thing? As Tyler Durden said in Fight Club, “You are not your job”.  And yet, for many, work seems to be taking over, not just giving them a sense of identity but becoming their whole identity. Increasing demands from people’s work, increasing hours, increasing emphasis on productivity.. with everything in work being measured, even the length of emails, in an effort to squeeze every last drop of productivity from workers  …the ‘always-on’ factor of laptops, smartphones etc…the increasing tyranny of externally imposed targets…has caused the Mental Health Foundation to describe work as the ‘biggest, most pressing challenge to the mental health of the nation’, with 40% of employees they talked to neglecting other aspects of their lives and, of those who worked overlong hours, 27% feeling depressed, 34% anxious and 58% irritable.

(And why such long hours for some workers when shorter working hours can increase morale and motivation and therefore increase productivity? Why such long hours for some and zero hours for others? Why not share work out more fairly? And why is this obsession with time-managed productivity extending to children? Why aren’t they allowed just to do nothing, instead of always being ‘scheduled’ Presumably to turn them into a new generation of conformist, well-behaved little workers…two brief asides… )

So clearly work is not the glowing remedy for all psychological and spiritual ills that it’s often thought to be. And this is especially so if the work of ‘low psychosocial quality’… insecure, badly paid and with tight controls on workers’ autonomy…such as jobs in factories, fast food restaurants, call centres. These are jobs that the average person finds monotonous, meaningless and utterly soul destroying…and the ‘non-average’ person generally finds even more so, to the point of being intolerable. Because this is something else that arose from discussions in the group that inspired this article, that those with mental health issues found it even harder than others to do a job they hate, not because they’re lazy or incapable but because they’re more ‘sensitive’—to their surroundings, other people etc. and also to the meaningfulness, or otherwise, of what they do. Put simply, they’re not unemployed because they care less about work, but because they care more.

As said at the beginning, it’s complicated. The Royal College of Psychiatrists found that those who were unemployed for more than 12 weeks were between 4 and 10 times more likely to suffer from depression and anxiety; also had increased levels of suicide, doctors’ visits and bad physical health. But was unemployment the cause or the effect? The RCPsych were very sure it was the cause and I’m very sure this is true. Based on the experiences of the group, myself and almost everyone I know, lengthy lack of work is seriously detrimental to your wellbeing.  But it’s equally true that just getting back to work isn’t enough, as not just any job will do. The latest Gallup poll found that, out of 25 million employees in 189 countries, only 13% of workers were truly ‘engaged’ with their work, while 63% were just ‘sleepwalking’ and 24% actively ‘hated’ their jobs.

And, when it comes to those who already consider themselves to have mental health issues, to work or not to work is an even more difficult question. And it seems the feelings of the Changes group are not atypical. The Equality and Human Rights Commission found that those with mental health conditions that they surveyed wanted more flexible working, more supportive managers and more understanding from colleagues. The problem is that, while they may want, and actually need, these things, they may not be getting them…

SW

The views expressed in this post represent those of the author and are not necessarily those of Changes Bristol

image by Freepik

Day four in the Big Brother house

And I’m sat in Survival Corner as a living exhibit while I do some work. It’s a very strange experience. A few speak to me or give me an uncertain smile, some pretend I’m not here, some just walk right past. I think in some small way it’s a little like the whole experience of having a mental illness. People don’t quite know what the ‘right’ reaction is so perhaps it’s better to try not to have one at all for fear of causing offence or maybe making things worse.

Actually it’s a bit lonely down here by myself and the best thing people could do would be to ask me about it. I’d be happy to talk about my own experiences. Right now I feel like I’m in a tv programme – I could have a Geordie voiceover describing my interactions with people or David Attenborough talking through my battle for survival in sympathetic but practical tones.

What I do have is coffee and a muffin brought by my fellow exhibiters once again demonstrating how fab peer support is 🙂 Photo on 11-05-2017 at 13.05.jpg

 

What an experience!

IMG_3089.jpgSo here we are, halfway through the week and we’ve had all manner of visitors to our exhibition so far: old friends, potential group members, people who work for other related organisations, people who have experienced difficulties with their mental health and have recovery stories to tell, people still having troubles and people concerned for others as well as some staff from the council building who have shown a real interest in what we do.

Everyone has been very complimentary, some leaving lovely notes in our visitors’ book, some dropping donations in the pots and some leaving us with their thanks for what we do. Apart from the odd one or two people, most have been hopeful, even if not exactly thriving and the whole experience has been really positive. We hope the next couple of days will be just as good.

Making a right exhibition of ourselves!

Photo on 08-05-2017 at 13.02 #2.jpgBristol buddies do come and visit us at the Park St Vestibule at City Hall. We’re here until Friday with our exhibition to mark Mental Health Awareness Week. The sun is shining, people are starting to take an interest and we are happy to talk about Changes and Mental Health.

We set up in good time this morning and opened on the dot of 12.30. We’re still finding things to tweak though – but I suspect we’ll be doing that all week!

 

Are you surviving or are you thriving?

SoT poster

The Mental Health Foundation has hosted Mental Health Awareness Week in the second week of May since 2000. In previous years the week has focused on how mindfulness, anxiety, sleep deprivation and relationships can impact our mental health. In 2017 the theme is ‘surviving or thriving’.

Good mental health is more than the absence of a mental health problem. The theme of ‘Surviving or Thriving’ looks at mental health from a new angle. Rather than ask why so many people are living with mental health problems, it seeks to uncover why too few of us are thriving with good mental health. With people struggling to cope with the demands of life and stuck on getting through the day, it will explore:

  • how many of us are surviving or thriving, and the difference between the two
  • why some communities are under strain and what government can do to support them to thrive
  • what steps we can take to look after our mental health, building resilience to cope with the demands of life.

During the week of 8-14 May, the Mental Health Foundation will be producing a new report to highlight the numbers of us who feel stuck on ‘survive’. They will be providing advice and insight into how we can build good mental health in the context of our work, our digital world, our parenting approach and in our communities. The Mental Health Foundation will also be calling on the Government to do more to promote better mental health.

At Changes Bristol we are going to be part of Mental Health Awareness Week by holding an exhibition of work produced by our own members on the theme of Surviving or Thriving. We are really excited that the exhibition will be held in the Park Street Vestibule of City Hall.

Our exhibition will include a wide range of pieces from our members; some of them will be interactive! As you enter, you will be immersed in a collection of work depicting the struggle to survive with a mental illness in today’s world. This isn’t always a nice place to be, and you may feel uncomfortable as you take in some of the experiences of our members. As you move round, there is a transition from surviving to thriving; you will see the many, really positive achievements of our members despite their difficulties and challenges. We really hope you will leave feeling uplifted and better informed about the impact mental illness can have.

 

 

Training tonight!

I’m looking forward to tonight’s training session with the new volunteers. I always love having new people join us as well as seeing existing members who have decided they want to contribute their time to helping out with the groups.

Tonight we’ll be talking about the nuts and bolts of the meeting. Last week we described the structure, now we’re on to how we use the resources.

I really like it when people ask good questions. It makes me think about how I’m working myself. Now and again it’s good to come off autopilot and think about why we do something the way we do or question what we really mean.

Right now I’m questioning how to make 4 hours’ worth of material cram into 3 hours. Any ideas?

 

K

 

Making a change

This afterneve we’re having another another crafting session in the office. We’re preparing for our exhibition next month for Mental Health Awareness Week.

I have ideas. I have lots of ideas. What I don’t have is time to take them out of my brain and into reality. That’s often the way with creative pursuits. So  many other things make demands on our time. Important things, time bound things and things that I know I really ought to do before embarking on any kind of craft.

Making things feels sort of indulgent, a wasteful use of my time. It feels like it isn’t important and I should find something more worthy to be doing. After all, what are the consequences if I don’t produce a set of cards or a wall hanging or a display interpreting the stigma of mental illness? Nothing of importance, right?

Actually there’s one big one. Stress. I’ve promised an exhibition and there WILL be an exhibition. The act of making things usually reduces my stress. Making things when up against a deadline is a whole different kettle of fish. Every minute spent not making things is another point on my stress graph.

 

Craft for me is usually one of my coping resources. It helps me feel calm, to reconnect with the real world, to touch things and find peace in the textures and colours. Now I need to craft in order to reduce the stress of not crafting. That hurts my brain.

Expect something whimsical and ridiculous tonight! I need to do something fun.

 

‘Ten Days in a Madhouse’

DSCN3340Wednesday 8th March was International Women’s Day and one woman I heard justifiably eulogised on the radio was journalist Nellie Bly. Born in 1864 in Cochran’s Mills, Pennsylvania, USA, she is best known for going around the world, in the style of the fictional Phileas Fogg, only eight days faster. But she also made a great contribution to investigative journalism, especially in the cause of those being treated for mental illness.

She first began writing for the Pittsburgh Dispatch in 1885, when she posed as a sweatshop worker to expose the poor conditions for working women. But, frustrated by the lack of opportunities for female journalists, she moved to New York in 1887 and began writing for the New York World. One of her first assignments was an investigation into the conditions in a notorious insane asylum on Blackwell’s Island ( now Roosevelt Island ), which she titled ‘Ten Days in a Madhouse’. This assignment exposed serious neglect, poor health care and physical abuse.

Posing as Nellie Moreno, a Cuban immigrant, she checked into a New York boarding house, where she refused to sleep, saying she was afraid of the other residents because they looked ‘crazy’, and then continually asked where her bags were. This fairly unextreme behaviour got her taken, first to court, and then to Blackwell’s. The asylum was supposed to be a state-of-the-art humane and moral institution but, when funding ran out, it’s good and progressive intentions did also. Nellie found ‘oblivious doctors’ and orderlies who ‘choked, beat and harassed patients’, often deliberately provoking them to get violent results. She also found the women were refused all reading materials or forms of entertainment and had to endure filthy rat-infested conditions, rancid food and forced, freezing cold baths. Many women there were completely unaffected by any mental health problems but were incarcerated simply because they were foreign so nobody understood them; others were there because they were poor, or because they had been unfaithful to their husbands. And the worst aspect of the asylum was the constant isolation and enforced inactivity…as Nellie Bly said:

“What, excepting torture, would produce insanity quicker than this treatment?…Take a perfectly sane and healthy woman, shut her up and make her sit from 6am to 8pm…do not allow her to talk or move…give her bad food and harsh treatment, and see how long it will take to make her insane…”

Nellie only spent 10 days there, a very short time, but she found it easy to understand how a lengthy stay there would be horrendous, and permanently damaging, physically and mentally. One of the women she met reported:

“…they tied my hands and feet, and, throwing a sheet over my head, twisted it tightly around my throat so I could not scream, and thus put me in a bathtub filled with cold water…”

And despite the fact that, from the moment Nellie actually entered the asylum, she acted completely sanely and rationally, no-one (except one very kind doctor) would believe, or even question the fact, that she should not be in there:

“Yet strangely to say, the more sanely I talked and acted, the crazier I was thought to be…”

Her writing on the subject caused New York Assistant District Attorney Vernon M. Davis to launch an investigation. When the Grand Jury visited, Blackwell’s clearly had received advance warning, so that the place had been cleaned up and the most badly treated women hidden from sight. However, Nellie’s story was believed, resulting in a number of changes, including a greater appropriation of funds for the care of mental health patients, more supervision of nurses and health care workers, and regulations to prevent overcrowding. Nellie wrote other such investigative pieces after this, specifically looking into conditions in prisons and factories.

Care and treatment for those with mental health problems may still be oppressive, unfair and often barbaric. But, like most things, it is all relative. And although Nelly Bly went on to be better known for travelling around the world, alone, in 72 days, her pioneering work in mental health reform, particularly for women, is well worth remembering.

SW

The opinions expressed are those of the author and do not necessarily reflect those of Changes Bristol

Welfare reforms: who cares?

As many of our members know, only too well, Personal Independence Payment or PIP has never been an easy benefit to claim successfully. In fact, frontline welfare advisers recently told the work and pensions select committee that the PIP process was “inherently flawed”, resulting in thousands of wrong decisions and causing widespread harm and distress to claimants. According to the DWP’s own statistics, just 45% of new claims for personal independence payment have been successful where the claimant is not terminally ill. The success rate for DLA to PIP transfers is currently 69%.

People with mental health problems face many, many barriers to making PIP claims but it really seemed that things were taking a more positive turn when an Upper Tribunal recently ruled people who need support to make journeys because of overwhelming psychological distress should be eligible for the  mobility rate of PIP.  The tribunal decision ruled that claimants who need mobility help due to psychological issues should be entitled to the same help as people with physical issues.

However, the Government announced it would change the law rather than follow the court’s ruling. The Government didn’t want to pay the extra cost. And so, in an attempt to save £3.7bn, it introduced emergency legislation to overrule the tribunal decision. The changes to the law were introduced via a ‘statutory instrument’ which allows ministers to fast-track changes to existing laws without the need for a vote or to be subject to much scrutiny.

The Social Security Advisory Council (SSAC), who were not consulted about the new regulations before they were introduced because the government regarded the matter as too urgent, have held a meeting and written a letter to Penny Mordaunt, Minister for Disabled People, Health and Work attacking this controversial decision. 

In its report, the SSAC said it was “particularly concerned” that overturning the tribunal’s ruling will cause confusion. “It is not clear how tribunals, decision makers, or health care professionals conducting assessments will respond to changes in descriptors to exclude ‘psychological distress’,” it warned. The SSAC urged the DWP to consider “testing the proposed changes with health care professionals and decision makers to ensure the policy intent behind the regulation is clearly understood”. And it concluded: “The department should both (a) consult more widely with representative bodies and health care professionals; and (b) improve the estimate of likely impact before the changes are introduced.”

New guidelines issued for benefit assessors do appear to suggest that people whose mobility is limited due to mental health conditions are not entitled to receive the mobility component of PIP even if their mobility is limited to the same extent as someone with a physical impairment. 

This change in the law which came into force on 16 March could leave disabled people without vital financial support, according to mental health charity bosses. Thirty-two chief executives wrote to disabilities minister Penny Mordaunt, stating that they were “deeply concerned” by the proposed changes to disability benefits, but the changes went ahead anyway.

A letter sent to Penny Mordaunt from the Disability Benefits Consortium, said:

“We are deeply concerned by imminent changes to Personal Independence Payment which will leave at least 160,000 disabled people and those with long-term conditions without vital financial support….We believe this undermines the principle of the PIP assessment and its ability to fairly provide financial support, regardless of impairment or condition. Those with mental health issues, learning disabilities and autism face just as severe barriers and costs as those with other impairments – these changes fail to acknowledge this…We are also worried that the full scale and impact of these changes will not be understood before they come into effect.”

Phil Reynolds, co-chairman of the Disability Benefits Consortium and policy and campaigns adviser at Parkinson’s UK, said:

“Across the consortium, we have had our helpline and advice services inundated by calls about PIP since it was introduced…Instead of supporting disabled people, the benefits system seems increasingly rigged against them. The whole system needs urgent improvement, in order to accurately assess the support they need. Disabled people cannot afford to wait.”

There’s an argument floating around various internet forums that this change directly discriminates against people with mental health problems. After all, if a person cannot leave their home without copious amounts of support in place, should it really matter if the inability to travel independently stems from physical or mental roots? Or a mix of the two? Actually, the PIP application process really doesn’t cater for people who have both physical and mental disabilities. Pick a side people; you can’t have both! The more realistic among us are well aware that many people do have mental and physical health problems that have an inconvenient tendency to exacerbate each other. This is a really bad case of the whole equalling more than the sum of its parts as mental and physical health problems combine to produce an overall disability that is far, far more incapacitating than any of its individual components.

 It is now possible for two neighbours with similar or even identical levels of difficulty leaving their homes to attend a medical appointment to be treated completely differently by the very process that is theoretically in place to support them and that’s just not funny. It’s not funny that our current government promised that mental health would be given much greater parity with physical health but then backtracks and effectively says “Nah, the mentally ill can stay home, we’re only helping the ‘proper’ disabled get out and about.” It’s like we’re going backwards to the time when so many people ‘knew’ you could tell a disabled person from a non-disabled person by their wheelchair or lack thereof. In the words of Theresa May’s head of policy, George Freeman, personal independence payments  should go to “the really disabled people who need it” as opposed to those “taking pills at home, who suffer from anxiety”. Wow George. Way to put us in our place!

 In yet another twist, Labour peers used a rarely used ‘regret motion’ in the House of Lords demanding an urgent review of the new policy to determine the impact on people with mental health conditions. The government are supposed to carry out impact assessments whenever  they introduce changes like this but in recent years have kept ‘forgetting’ to do this when implementing their numerous welfare reforms. Unfortunately, the Lords “regret” will have no impact on the disabled people losing their benefits as it is simply a motion that criticises the government. The controversial changes to PIP were subject to an Emergency Debate on 29 March, but as it was left until the last day of parliament before the Easter break there was no time for a vote which means, under the terms of emergency legislation, that MPs will be out of time to demand a vote after the break.

The cumulative effect of the cuts on disabled people in Britain led to a UN investigation. After receiving evidence from disability organisations about an “alleged adverse impact” of government reforms on disabled people, the UN Committee on the Rights of Disabled Persons (CRPD) sent two committee members to investigate and identify any gaps in human rights protection for disabled people. The findings were that UK welfare reforms have led to “grave and systematic violations” of disabled people’s rights. Changes to housing benefits, criteria for parts of the Personal Independence Payment, a narrowing of social care criteria and the closure of the Independent Living Fund, all “hindered disabled people’s right to live independently and be included in the community”. The committee made 11 recommendations to the UK government, including calling for a complete impact assessment of reforms introduced since 2010, and introducing measures to fight “negative and discriminatory stereotypes”.

However, Work and Pensions Secretary Damian Green rejected the report’s findings and said the document demonstrated “an outdated view of disability which is patronising and offensive”. Patronising and offensive to who exactly? Weirdly, there don’t seem to be an awful lot of disabled people protesting that they were left feeling patronised and offended by the findings, for many it seemed like the first time an authority had actually taken the trouble to listen to them. Shadow work and pensions secretary Debbie Abrahams said: “The UN report confirms that, despite Theresa May’s warm words, this government is failing sick and disabled people.”

SRG

Disclaimer: Opinions are those of the author and do not necessarily reflect those of Changes Bristol.